Day 1: MGH... Mady's new home for a while

Monday, September 10, 2007 - Chris called from the Emergency Room at Mass General Hospital (left) shortly after I spoke with Mady's pediatrician. A blood cancer specialist had told her that Mady almost certainly has Leukemia. We were devastated, and Julia and I headed to MGH. Mady would be admitted that night, and asked for my big Red Sox t-shirt to sleep in.

I really knew nothing about Leukemia and I had had just enough time to Google it and get really scared. There are several forms, one of the worst being Acute Myeloid Leukemia (AML) with a 29.4% survival rate according to my comprehensive Google research. The better Leukemia is Acute Lymphocytic Leukemia (ALL) which was listed as having a 75% survival rate. None of the choices sounded that great. And what does survival rate mean anyway? No time to find out... we had to get to MGH.

We found Mady and Chris in a cramped ER exam room with equipment and supply shelves covering all the walls. We all had a good cry... even Julia, who is normally on the stoic side. We learned that Leukemia is considered a cancer success story and is CURABLE. The treatment period is typically 2 1/2 years and that Mady could get a tutor for missed school. I believe we all misinterpreted this to mean she'd be out of school for that long, and a while later Madeline asked "Dad, will I be kept in THIS room for 2 1/2 years?" We all had our first little laugh of the day, and we assured her that she'd soon move out of this tiny windowless room, but we didn't know what else to say--we had no idea at that point how long she'd actually have to spend in the hospital.

Oddly, there was a TV in that exam room, and while waiting (turns out you do a lot of this when you or a family member has cancer) we we mesmerized by a show we had never seen before called Survivorman. In each episode, this regular guy spends seven days in a very hostile wilderness environment with not much more than the clothes on his back, a pocket knife, and one match. He lugs the video equipment around himself, and has no camera crew to bail him out. In one that we saw, it was near freezing in the Yukon wilderness and one of the first things he did was accidentally fall into the water and soak everything. We were riveted as he suffered setback after setback, but he never gave up, and in fact he stayed pretty upbeat. I remember getting goosebumps and thinking that the show was a positive omen--it could be a good metaphor for Madeline's upcoming struggle: His situation seems bleak, but you KNOW he's going to make it. (Julia pointed out to me later: "Dad, of course he was going to survive. It's a TV show. They wouldn't show it if he didn't make it!")

Madeline had a 100.7 fever that evening so they did a chest x-ray to look for infections in her lungs and lymph nodes. They also ran an EKG and drew more blood for testing. She was scheduled for a bone marrow biopsy (for testing), a picc line (a tube that runs from her arm to an artery near her heart for drawing blood and administering intravenous meds), and a spinal tap (to see if she had cancer cells in her spinal fluid). All these things were to happen tomorrow in the OR under general anesthesia. That night Mady was admitted to room 1816 in Pediatrics, and she received units of blood, platelets, and antibiotics. No one knew yet what kind of Leukemia she had, so we didn't talk about it, and I didn't tell Chris what I had learned about AML and ALL. Chris stayed with Madeline, and Julia and I drove home in a daze.